My opinion on the topic “angry posts by patients on social media are harmful and something should be done about it”

[Andy]

Are such posts unhelpful? Broadly, yes.

Should we be aware of the issue? Of course.

Should something be done about it? I’ll expand on this below but directly, no, indirectly, yes.


By directly, I’m referring to suggestions such as contacting the person responsible for an “angry” or “inappropriate” message and “educating” them in what is deemed to be the “right” way to approach things. Angry people tend to be angry for a reason, and if that reason is not addressed then they are highly unlikely to change how they express themselves, and someone approaching them telling them to be less angry is likely to have the opposite effect. So in my opinion, this would be a pointless waste of energy and time for both sides.

I also challenge the scale of the issue. The impression tends to be given that these messages are harmful to progress and setting pwME back - I just don’t believe that. What I have seen on social media is that, as we make progress, the number of “angry” messages has decreased. There will be certain topics and individuals who might inspire an increase in messages deemed inappropriate but, in the grand scheme of things, the impact of those messages will be negligible.


By indirectly, I’m referring to dealing with the reasons why people are angry, and for most it will be the issues that we are trying to change already - the lack of research, appropriate care and support. So my argument is that the energy and time that might have gone into complaining about, and possibly contacting individuals and attempting to educate them, would be better invested by far into these more global issues.


An additional issue I have with this topic. It comes across, to me at least, as lacking a huge amount of empathy for those who express themselves in the “wrong” way. Those who express themselves in an angry way are likely, I believe, to be in very challenging situations - alone, unemployed, attempting to scrape by on benefits or savings, housebound at best. Social media might be their only opportunity to vent and to demand that they should change how they should use it is, seeking to take away, in part, the small amount of control they have in how they express themselves. It also comes across as someone who has some element of privilege speaking down to someone more disadvantaged, telling them how to speak and act because they believe that that is how they achieved their measure of privilege.

In short, I don’t believe it is a big enough problem to warrant being so judgemental about how a small number of disadvantaged people might express themselves - use the energy and time spent on better things.

 

[Shadrach Loom]

Anger on social media is a much broader problem. That’s being addressed by algorithmic nudges from platforms to either ask posters to reconsider, or to restrict the surfacing and promotion of angry content. Those techniques are often ineffective but are improving fast. Longer term, social disharmony is less likely to be an issue as social networking is increasingly balkanised and decentralised. In short, our echo chamber is less likely to upset clinicians’ echo chambers in the future, further reducing the need to strategise about it.

 

[TiredSam]

I have been blessed with a temperament which has allowed me to maintain a continuous state of fucking fury for 8 years straight. I am not on any social media, it probably wouldn't be a good idea, as I'd hate to undermine the splendid efforts of those of us who use social media effectively in a considered and responsible manner.

Having said that, I shall continue to shoot my mouth off on this forum with as much sarcasm and bile as the mood of the moment takes me.

In short, I don’t believe it is a big enough problem to warrant being so judgemental about how a small number of disadvantaged people might express themselves - use the energy and time spent on better things.

This. I don't believe it's an issue. If it is, it's so miniscule that our time and energy can be far better spent than worrying about how we are perceived by a small group of malodorous psychs who constructed a damning narrative of us long before social media was even a thing.

Twitter is a cesspool. A couple of PACE authors use it to troll and bad-mouth us. Otherwise they just use it for posturing. It is a cesspool. Who cares what anyone says to anyone on Twitter? Nobody has changed the culture of Twitter since it became a thing, and we certainly aren't going to. Polarisation, division and mud-slinging is built into the algorythm. It is designed to provoke people, make them angry and shoot their mouth off. If that doesn't appeal, don't go there. I don't.

 

[Mij]

I've read many tweets from frustrated/angry ICU nurses and doctors concerning all the disinformation/lies/gaslighting regarding Covid and vaccines. I'm fine with it and can only offer my empathy.

 

[Dolphin]

I don’t tend to challenge that many people directly on social media. People don’t tend to like to be criticised publicly.

Saying that, I have got frustrated over the years by for example some criticism of journalists and media coverage not just in social media but also in comments. A piece can be sympathetic and overall good in my mind, but some people can focus only on a “negative” part (including on terminology). I think this has caused some enemies to be made with journalists along with others who are reluctant to report on it. This could also cause them to believe researcher claims of harassment and in general be more willing to report negative comments about the ME community.

I think people can be more open to listening if you praise things you like rather than just focusing on the negative.

 

[Aimossy]

An additional issue I have with this topic. It comes across, to me at least, as lacking a huge amount of empathy for those who express themselves in the “wrong” way. Those who express themselves in an angry way are likely, I believe, to be in very challenging situations - alone, unemployed, attempting to scrape by on benefits or savings, housebound at best. Social media might be their only opportunity to vent and to demand that they should change how they should use it is, seeking to take away, in part, the small amount of control they have in how they express themselves. It also comes across as someone who has some element of privilege speaking down to someone more disadvantaged, telling them how to speak and act because they believe that that is how they achieved their measure of privilege.

I agree with @Andy on everything including the above but I would like to add that as @TiredSam says twitter is a cesspool and a place for many to vent at times. I have vented on there myself to be honest. Not sure if at times it has been constructive when I have. I am sure that Andy did not mean the above that I quoted as an absolute definitive generalisation. Many who do vent in ways that are unhelpful will be privileged as well but a hell of a lot won't be. Just like many who aren't privileged and are privileged don't vent in unhelpful ways.

 

[phil_scottish_borders]

Interesting. Here's an example of BPS "researcher" Prof Michael Sharpe using the angry patient voice to confirm his own view that he & other "researchers" are being subjected to hostile attacks. Does this help or hinder our cause? Source (March 2019): https://www.dailymail.co.uk/health/...e-researcher-QUITS-online-trolls-hostile.html

 

[Kitty]

If researchers and academics post their opinions on social media, they're looking for a response. The option of not posting their opinions is available to them every second of every day.

All users have a responsibility to report and call out hate speech and threats of harm, but other than that...if you're scared of being barked at, don't torment the dog.

 

[Wonko]

I show my total distane of social media by never using it.

I think that social media is getting the message

 

[NelliePledge]

Of course if you’re looking to promote a certain agenda then acting as a troll on Twitter will get you the responses you need to use to get press coverage using your ‘eminence’

 

[Trish]

Interesting. Here's an example of BPS "researcher" Prof Michael Sharpe using the angry patient voice to confirm his own view that he & other "researchers" are being subjected to hostile attacks.

The tweets in that article are accurate descriptions of Sharpe's work on ME/CFS in my view, except I wouldn't use that swear word, but that's individual choice. If criticisms of his work, as in the tweets shown, drove Sharpe away from saying anything on social media or to journalists or anyone else about ME/CFS, then they have been effective and I would thank the individuals involved. Of course they have done no such thing. The tweets shown were posted long after Sharpe and White started their campalgn of denigrating ME/CFS patients. And they haven't stopped.
See this post:
https://www.s4me.info/threads/paul-...les-and-other-media.15629/page-38#post-328847

I think it's absolutely fine to describe the work on ME/CFS of Sharpe, White, Wessely, Crawley, Chalder, Moss-Morris et al as harmful junk, and if people on other social media want to characterise it as the work of charlatans, I can only agree. After all, we've had politicians in the UK parilament describing PACE as the biggest medical scandal, and exposing Sharpe for trying to stop them by accusing them of bringing their political office into disrepute, or some such nonsense.

And recently we saw someone from the Royal College of Psychiatrists trying to subvert NICE's decisions on the ME/CFS guideline evidence review in a very underhand way.
https://domsalisbury.github.io/mecfs/nice-mecfs-guideline-pause/

And they twist the whole saga of their research to journalists, denigrate sick people, blame sick people to cover up the flaws in their own work, and pretend that valid criticisms of their work are harassment.

A few rude and angry tweets from powerless sick people are not what made them what they are. They are crap researchers who made up a theory for their own gain 30 years ago and have used all the power at their disposal - journal publication, the SMC, tame journalists who don't research in any depth or just publish the SMC press releases, and political influence.

Let's get things in perspective. Our suffering at the hands of the BPS people and their false narrative about all we need is positive thinking and exercise is on a scale of harm that so far outweighs a few angry tweets from powerless sick people. It's ridiculous in my view to even contemplate placing one iota of blame on angry patients for what we have had imposed on us, the harm that has been done, and the care we've been denied for decades.

The professionals have the power, patients don't, and some of them play far dirtier than any of us have ever done.

 

[DigitalDrifter]

Let's get things in perspective. Our suffering at the hands of the BPS people and their false narrative about all we need is positive thinking and exercise is upon a scale of harm that so far outweighs a few angry tweets from powerless sick people

To be angry about the injustices one faces is a sign of strength. It is a sign that one has the will to fight back against those injustices, rather than bowing down and accepting it as fate.

 

[Arnie Pye]

Interesting. Here's an example of BPS "researcher" Prof Michael Sharpe using the angry patient voice to confirm his own view that he & other "researchers" are being subjected to hostile attacks. Does this help or hinder our cause? Source (March 2019): https://www.dailymail.co.uk/health/...e-researcher-QUITS-online-trolls-hostile.html

Some of the reader comments on that link are awful e.g. someone saying that they were cured by the Lightning Process.

 

[DigitalDrifter]

Some of the reader comments on that link are awful e.g. someone saying that they were cured by the Lightning Process.

Last time I checked the ME Association's survey about treatments there were people (a small minority) claiming to have improved from CBT, Exercise, and other quack treatments. I'm guessing they either have fluctuating ME or they were mis-diagnosed.